Disease‐related behavioral patterns and experiences affect quality of life in children and adolescents with vitiligo

Background Vitiligo is an acquired, non‐contagious depigmentation disorder involving a patchy loss of skin color. It often leads to stigmatization, embarrassment, and reduced quality of life (QoL) in adult patients. Little is known about children’s reactions. Objectives This study aimed to explore disease‐related QoL and experiences in a multinational group of children and adolescents. Methods Quality of life, disease‐related experiences and behavior, and sociodemographic data were examined in 24 boys and 50 girls (age range: 7–17 years) using the Children’s Dermatology Life Quality Index (CDLQI) and additional questions. Eighteen children without skin disorders served as age‐, sex‐ and skin color‐matched controls. Results The mean disease duration was 3.5 years. The most common sites of onset were the trunk, legs, and head and neck. Overall, 35.1% of the 74 subjects reported a positive family history, 91.9% had visited a doctor, and 75.7% had received treatment. Two‐thirds (66.2%) were distressed by their vitiligo, and 93.2% had experienced low‐key stigmatization, 44.6% nasty comments, and 21.7% bullying. A total of 24.4% had concealed their disease, and 29.7% had avoided situations because of vitiligo. Frequency of stigmatization influenced avoidant behavior. Parents, particularly mothers, and friends were important sources of support. Patients and controls had similar numbers of friends and leisure time activities. The mean CDLQI score of the group was low (2.8). Higher CDLQI scores were related to stigmatization, hiding of white spots, facial depigmentation, avoidance of situations, and a vitiligo‐negative family history. Conclusions Disease‐related stigmatization, negative experiences, and avoidant behavior affect QoL. Therefore, the CDLQI should be combined with other instruments to screen for disease burden. These results call for the careful evaluation of young patients with vitiligo.